Tag Archives: Children

Marie and her husband Dan are the proud parents of Mark, who’s three years old. Marie has brittle bone disease and uses a wheelchair, so aspects of being a mum can be challenging.To mark Mother’s Day, Marie updates us on their past year – Mark has been coming on in leaps and bounds, and there have been changes for Marie and Dan too.

Mark has my independent streak

Mark has stopped being a toddler and is most definitely now a fantastic, handsome and intelligent little boy. He has absorbed my fierce independent streak and most household tasks now echo with ‘No, Marky do it!’ in his own special little voice. His increased independence makes life easier physically – all the jobs I couldn’t do like picking him up are now in the past – but we have new challenges, how DO you discipline your toddler when he’s your own height? It’s a good job I can still shout and hold the purse strings!

One of his favourite things (at the moment!) is cooking, and this is where our fantastic adapted kitchen comes in; it means I can cook for the whole family and Mark can get involved too. He loves making gingerbread men! We designed the kitchen ourselves with a number of clever adaptations using standard materials to make it as cheap as possible – things like using wall units as low-level cupboards to give my chair room to fit underneath. It’s amazing how a few simple bits of lateral thinking make all the difference!

While the more sedate things are mummy jobs, the active things are daddy’s domain. Mark recently started swimming, something that he can do with Dan while I watch. I can swim (I’ve been known to flap about and propel myself up to 800 metres, although I won’t break any records!) but the idea of going in a bustling, busy public pool with Brittle Bones doesn’t sound too smart. I leave that one to the boys.

Returning to work

And Mark definitely is a boy now, we registered him in our local preschool for 3 mornings a week starting back in January – the start of his funded time. He adores it! Whilst we’ve always had him out and about doing things (Start the Art, Mini Strikers, Rugby Tots to name but a few) since he was about 6 months old, he really has responded well to the structure of preschool. The loving and nurturing home we have created for him has worked, he’s ahead of his age targets across the board.

Mark now being at preschool has left a hole in my life, and I’m never one to sit still doing nothing. I’d get bored too fast. So, I decided to use my degree (First-class BSc in a number of subjects including Social Policy and Child Development) and my long experience in the health and social care field as both a recipient and worker to get a job where I can really make a difference. Such an opportunity arose and I’m proud to say I am now a college tutor, tutoring a wide range of courses. It’s brilliant! I get to bring a unique view to the table, helping students (e.g. care practitioners) see the wider issues at play beyond just learning the course. I hope they are learning a lot! Mark can also see me earning (as he puts it) ‘pennies for rides!’. I guess that returning to work as your child gets older is just another one of them milestones and I see myself as just like any other mum despite the 200+ broken bones, life-saving surgery as a teenager, the fact that I’m fully wheelchair dependent and have daily chronic aches and pains from years of physical trauma.

Dan has a new job too. Sadly he was made redundant following a very successful career in space research – he was one of the team who landed a spacecraft on a comet in late 2014. Google ‘Dan Andrews Rosetta’ if you want to read more! Sadly the end of the mission meant an end to the funding, and he lost his job. That was, naturally, a worrying time for us all. Not only was he job-hunting – he needed a company within a short commute distance to tie in with family, with normal office hours and that would recognise his transferable skills. He struck gold and is now working in the fascinating field of special missions aviation. Mark should have fun telling his school friends about what Daddy’s done for a living!

Remembering my own mum

So that’s it from us. A year of changes for us all and a lot of adventures! We like to think we’re giving Mark the best upbringing we possibly can. He’s always doing things and he most definitely doesn’t see me as anything other than ‘Mum’! It is still hard doing this without my own mum, there are countless times when I want to just call her and ask ‘What do I do if he…?’ or to share the latest milestone met. Readers who read my last blog will know that she passed away very suddenly in 2012 and this will be another emotional Mother’s Day for me. As well as all my other health conditions I am now also battling prolonged grief disorder but I am using my strength to ensure I am making each day count and living life to the full with my lovely little family. All I can say is that my upbringing from her definitely stuck, I wouldn’t be the fiercely independent working mum and wife that I am today without her teaching me that my disability needn’t stop anything!

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Dan White is the author of the brilliant The Department of Ability comic book, featuring a cast of superheroes whose impairments are their greatest superpower.

For World Book Day, Dan tells us how he was inspired to create the comic book and why there needs to be more disabled characters in literature.

My book-devouring, art loving daughter, Emily, had stopped anticipating reading about disabled characters in her comics or literature. For her, that day would never appear. Or would it?

It was the disparaging look I saw on her face when she first learnt to read that set me on a course of action. Art, writing and comics are my second love, and that drove me to create the group of disabled superheroes that is The Department of Ability – a graphic novel with a difference, launching later this year!

Disability isn’t the main focus – they’re battling to save the world

I wanted to draw disability in a way that was not really about the disability. Yes, the five characters in he Department of Ability show physical differences, but there’s no backstory, no preface on disability and how it affects this motley crew, you just get 5 different SUPERHEROES battling to save the world in a final war between good and evil.

The Department of Ability are colourful, strong and fun! A ghost? Alien? A Dog? A Cheetah? Emily? How’s that for diverse!?

The characters from The Department of Ability comic strip

The Department of Ability has captured hearts worldwide even before the first volume is published. But it’s not just disabled hearts, it’s hearts from everywhere. From the warmth of Matthew Wright, to the voice of The Today Show USA, to the desk of comic genius Stan Lee, the belief and enthusiasm of established comic writer Leah Moore (daughter of Alan) and the tireless work of Scope, all who have seen and loved my creations see a future of change.

There’s a growing desire worldwide to see more diversity and essential inclusion. It’s a strong a message to those in charge of what we read and watch, telling them, “we love difference, and want to see more of it. We all have a right to be heard”.

Inclusion is vital, especially for children

Currently, this world seems to be run by people terrified of accepting disability into the media they enjoy but inclusion is vital, especially for children. They need and want to see images that reflect themselves, otherwise we’re going to have another generation growing up being seen solely as needy and marginalised. Who wants that?

I read and review many books on disability but they are incredibly rare and it makes you wonder how much more could be achieved if the industry threw caution to the wind and realised the good they could attain by giving us everyday, non-static, non-stereotypical characters.

Inclusion means include, and that means all. It will dispel myths, preconceptions, and will inspire the reader to discuss disability in a whole new light, barriers will fall and disability will not be seen as the last to the party.

I hope The Department of Ability will kick open a door for more diverse stories

All the talents that blossom and bubble in this amazing community will finally be able to show itself to the wider world, it just needs a thinker outside the box to see there is no barrier, and to see the power and might of the untapped purple pound, all £249 disposable billions of it.

2017 is the year of Department of Ability BOOK One, and it will hopefully kick open a door for an army of stories, pictures and talent to emerge. The authors are there, the future is there, let it in. The Department of Ability are loud, brash, dysfunctional, passionate and determined, a bit like everyone else on earth really.

Rosie and Glen were both bullied at school because of their impairments. In this blog they talk about how they moved forward with their lives and want to spread awareness about the bullying many disabled people face.

Rosie’s story

Being dyspraxic meant at school I always stood out like a sore thumb compared to others.

From the way I walk and move in a clumsy uncoordinated way which was different to others, always falling or bumping into others or other things.

To it’s made me socially anxious and struggle to maintain friendships. I always had and probably will have different interests to people my own age. I’ve always been seen as disorganised, chaotic, messy and a bit all over the place.

Being so different made me an easy target for being at the receiving end of some awful bullying. Words can have such an impact on your life and how you see and perceive yourself. It made me lose what little confidence I had to begin with and really struggle with my mental health and I would hear the words of what people were saying constantly. I thought I must really be stupid as it was constantly being said to me.

I put a lot of the bullying due to lack of awareness to what dyspraxia is, the fact that dyspraxia is invisible to the eye and negative assumptions of what I could or couldn’t achieve. As an adult I still struggle with anxiety and will never be a naturally confident person.

But my experiences made me decide that nobody should have to go through what myself or my family had been through and I was determined that more awareness needed to be raised about issues invisible to the eye.

The bullying I experienced has taught me the power of words and why I choose mine so carefully and not make judgements and assumptions about others.

I work as a learning support as a college and know the value of time, patience and empathy can have on students who may be struggling. I have also been able to prove the people wrong who said I wouldn’t achieve anything.

Words have the power to encourage, destroy, make someone loose confidence in themselves or make someone feel hopeful. We can all try and help people feel hopeful.

Glen’s story

“I’m still a little bit shy and probably always will be, but I’m far more positive now”.

I first went to a mainstream school, but it didn’t go well. The teachers didn’t know how to help, and I was bullied by other kids because of my sight loss. So I was removed very quickly, and transferred to a school for the visually impaired that my parents discovered.

Of course, my confidence had been shattered, so I was very shy. Which led to some of the kids at my new school bullying me as well. Not because of my sight, as they were in the same boat, but because they realised they could wind me up easily.

However, I made good friends, and the teachers were extremely supportive, so my confidence gradually improved over the years. And I even became friends with the kids who had teased me at first. Partly because I was being more successful than them, but I also got to learn more about them, which helped me understand their behaviour and put it into context. We learnt a lot from each other.

So things turned out well in the end. I came away with great friends, fond memories and good results, and got myself a degree and a job. I’m still a little bit shy today, and probably always will be, but I’m far more positive and confident than I would have been if I hadn’t moved schools when I did.

Do you need someone to talk to?

ChildLine – 0800 11 11

ChildLine is a free, confidential support service for children and young people. Their staff speak to thousands of young people every day – you are not alone. Phone 0800 11 11 or visit the ChildLine website.

As part of 30 Under 30 campaign, she has shared an open letter to parents of children with Cerebral Palsy.

I cannot begin to imagine what it is like to hear the words “your child has Cerebral Palsy”.

Initially, it’s probably expected that you will have thousands upon thousands of questions about expected progress, attainment, abilities / disabilities, meeting milestones and so much more. Now, if you have been in this situation, I expect you know that these questions cannot be answered in any great detail – with the vast majority left to play the ‘waiting game’ with approximations.

Like any ordinary parent, you may research Cerebral Palsy (CP) in the hope of finding these answers or at least a bit of support in this new unknown world for you and your child. Everything I can tell you is purely based on my experience over the last 18 years (as CP is unique to everyone and part of quite a large spectrum), but I hope it can at least give you a possible glimpse into the future: the highs, the lows and everything in between.

1. They will surprise you

Doctors have a way of airing on the side of caution and making predictions based on little information right from the start. However, people with CP are often determined to challenge these predictions which they have been given. I may not have received my CP diagnosis until the age of 7 but being 8 weeks premature made even surviving a matter of fighting the odds. At that moment in time, it would have been impossible to write the next 18 years and all the challenges which have come my way, but also all of the victories- because there has been plenty of them!

It may have taken longer to walk, run, ride a bike, tell the time but woe betide anyone who says I cannot do anything. Even if it may take them longer, I guess that can make it even more special when they get there. Your child will have their own unique milestones and their own victories, no matter how small they may seem.

2. There will be frustration

I would be lying if I said it was all plain sailing – but isn’t that the case with everyone? The hospital appointments, the physiotherapy, the urge to fit in with peers. At times, it can be incredibly difficult and I can assure you that many tears were shed.

When I was younger I was such a girly girl, everything had to be pink and pretty- trainers and a splint didn’t really fit the look I was going for. All I wanted was nice pretty shoes. We spent hours in shoe shops (and even a few shoes were thrown in sheer anger as the ‘perfect’ pair of shoes wouldn’t fit over my newly cast AFO splint).

Or maybe the frustration will come from coming last at a sports day running event when all you wanted to do was win for once. People with CP are resilient, we have to be, but that doesn’t mean it’s all progress.

3. Family and friends are all the support they will need

The support that you get from friends and family can be fundamental. At the end of the day, we all need a little helping hand – some people just need a little more. I have found that having friendships with other young people who have CP can be incredibly valuable. The opportunity to share similar experiences and to know you are not alone can certainly help when you are having a rough day. And by having other people with past experiences (who may even be older than you) can be a glimpse of how things might be. For example, I am currently planning university and speaking to other young people who are at university at has been really reassuring.

4. They will be amazing at adapting

Who says that you have to do everything just like everybody else? From personal experience, I know that sometimes it is actually easier to do things in your own way – in order to get the same result as everyone else. This could be mastering tasks with one hand, like tying shoe laces or eating a meal.

Adapting is often part of each day and at times can be difficult to come up with solutions, but you do get there. For some people adapting can include the use of certain equipment in order to gain independence. From experience I know this can sometimes result in a love – hate relationship. However, it can allow loads more freedom and give you the ability to achieve much more – it might just take time to adjust.

5. Humour will get you through

Sometimes you just have to laugh, even if that is just so you don’t cry. Laugh at the fact that you have ended up on the floor – again! Or laugh at the fact you did something and might have looked a bit silly. Yes, at times this can be hard, and laughing isn’t always the answer, but it will certainly help.

“When you find humour in a difficult situation, you win” – I believe this is so true and certainly a quote to live by!

6. The diagnosis is a very small part of your child

Your child is not the diagnosis they’ve been given, they are not solely the label put on them. First and foremost, they are your child, who just happens to have Cerebral Palsy, just like they happen to have blue eyes or brown hair!

A diagnosis may seem like it is taking over at times but really it is only one piece of the thousand piece puzzle that makes up a child. Having Cerebral Palsy can open so many doors and opportunities, it can make your child unique in the best possible way. The diagnosis is what you make of it, and if I was to pass on one piece of advice. It would be to turn those obstacles into opportunities, don’t look back and never ever put a limit on what you can achieve.

Wondering how to entertain the kids this half term? It’s never easy trying to juggle everyone’s needs, so we asked our online community for ideas. Here’s what they came up with:

Get out and about

Euan’s guide

Use the Euan’s guide website & app to check out access in places you want to go or for ideas of things to do in your area. Better still, upload your own reviews to help others and expand the coverage of the website. Reviews include features such as accessible toilets, carers discount, disabled parking and dedicated seating etc.

Most big cities have free lunchtime concerts if you look out for them. If you live in London, you’re spoilt for choice!

Accessible countryside for everyone

If the weather’s nice, head outdoors. Accessible Countryside for Everyone lists wheelchair walks, buggy walks, easy walks, support organisations, disability sport info, camp site with disabled facilities and more. Visitwoods.org.uk also lists over 10,000 woods open to the public, and allows you to search for features such as car parks and wheelchair access.

Toy libraries

Most Toy libraries have specialist toys for disabled children to borrow. Many projects also have stay and play opportunities. There may also be mobile home visiting services. Find out more at the National Association of Toy and Leisure Libraries.

Just ask!

Most attractions offer disabled discounts, special access or carers-go-free solutions, but people don’t often think to ask. Do ask whenever you are visiting any facility, as it can save you a small fortune.

Free cinema tickets for carers

Apply for a Cinema Exhibitor’s Card, which allows disabled people to obtain one free ticket for a person accompanying them to the cinema. The card costs £6.00 and last for one year.

Get away from it all

Tourism for all

Planning a short break? Check out Tourismforall.org.uk which provides useful information on accessible holidays in the UK and abroad. Their website also has a directory of holiday venues.

Disability Holidays Guide

The Disability Holidays Guide lists specialist tour operators for wheelchair users. You can search the guide for accessible hotels, villas and cottages. You can also find travel insurance, hire accessible transport and pre-order mobility aids and equipment.

Accomable

Described as ‘Airbnb for disabled people’ – if it’s just accommodation you’re looking for, check out Accomable for listings of accessible places to stay in the UK and abroad.

Get creative

Treasure hunt

My kids love a treasure hunt. The other day we collected sticks to make a pretend camp fire. Other times the ‘treasure’ has been stones or daisies. It’s a good, inclusive activity disabled and non-disabled children all enjoy.

Cheerio necklace

Try threading cheerios with your child to make an edible necklace.

Smelly socks game

Use up some old small socks or go to a charity shop. Then scent some cotton wool balls with different smells like tea, coffee, lemon, apple or tomato ketchup. Try a variety of smells, taking care not to use anything to which your child may be allergic. When the cotton balls are dry and all the ingredients are placed in the socks, tie the socks up with a ribbon, and play a game of Guess the smell.

Wrapping paper’s not just for Christmas

If your child is visually impaired children or has a sensory impairment, sparkly Christmas wrapping paper is very good for catching and holding attention. Gold, in particular, or anything with a rainbow/prism effect seems to work well to stimulate those with visual impairment.

Pitch perfect

Play tents make great sensory spaces when kitted out with everyday items e.g. fairy lights, hanging old CD’s, tinsel, etc…

Get scribbling

Stick some blank paper on a wall somewhere and turn it into a ‘graffiti wall’. You can also paint a wall with blackboard paint or put up a big white board for graffiti fun.

Star in your own film

Use your camcorder – or the video on your phone if you have one – to make a film of a favourite book. We did The Tiger Who Came to Tea, using a toy stuffed tiger, shots of our table set up for tea, empty food packets, and a homemade cardboard claw peeking round the front door. You can do lots of voiceovers to explain what is happening, or do it documentary-style and interview the Mummy, the child, the cafe owner, Daddy, the Tiger etc.

Get gooey

Make home-made slime. Get a pack of cornflour, mix it with water so it’s gloopy but not runny and then add green food colouring.

Life-sized cardboard cut-outs

Use either a large piece of card or lining paper (joined together, if necessary). Draw around each other and cut up old clothes and cloths to dress your portraits up.

A real catch

A velcro ball and catch mitt set has been fantastic for my son, who is unable to catch a regular ball. Great for fun, cause and effect and coordination. Ours was under £5 from eBay – check out ‘Spordas No Miss’.

Cinema club

Turn your house into a cinema. Choose a DVD together (bought or borrowed from the local library) make tickets, posters etc. Invite friends if you’ve got the space and then make popcorn, close the curtains and enjoy.

Make a den

My daughter loves it if we put a sheet over the dining table and make a den. I bring some of her sensory lights in and we all sit underneath. Her brothers think it’s great too!

Home-made jigsaw puzzle

I’ve found a good cheap way to keep my daughter occupied is to get her to choose a picture from a magazine, then I cut it up, and she reassembles the picture, gluing it on to paper. You can use photos as well. You can make it as simple or complicated as you want. I use simple ones to help calm her down and more complicated ones when she needs a new distraction.

Dance competition

Put on the music and have a competition.

Sensory play

We use a plastic box and fill it with different things for sensory play. Sometimes dried beans, sand, shaving foam – we put different smells in like vanilla essence or curry powder to make it more interesting. Sometimes we squeeze toothpaste in which is good fun when you get it all over your hands because it dries quickly.

Word games

We’ve been using words on the back of paper-clipped paper fish with a magnetic fishing rod to make a game out of reading.

Rubbish instruments

Raid the recycling and make some musical instruments. Fill jars and plastic containers with rice to make shakers, elastic bands over a box can make a great guitar and balloons stretched over tubs for some bangin’ drums!

Glitter party

Poppy has very little fine motor skills and struggles with most art and craft activities. So I stuck some wrapping paper to the wall and we made hand prints on it. Then we cover it in glue and threw glitter at. Messy but great fun!

Sensory wall

We’ve created a ‘sensory wall’ by sticking old yoghurt pots on the wall – you can also put bubble wrap, biscuit packet insides, corrugated paper, sand paper ….

These tips were all contributed by parents of disabled children. Find more great tips like these, and share your own on Scope’s online community.

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Deborah French is a cookery teacher and activity coordinator for disabled children and their families. She has a son on the autistic spectrum, a daughter with Down’s syndrome and young twins, and is the author of a new cookery book for disabled children.

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Claire is a mum to Daniel who is six. Daniel has profound and multiple learning difficulties. Claire has discovered a great solution for taking her son on their weekly food shop and wants everyone to campaign for better trolley access.

As a mum, taking my son to the weekly shop is a really common thing. But, shopping with my son and wheelchair in tow is a challenge.

I really struggle with both the standard and disability trolleys that are available in most supermarkets. Neither provides my son Daniel with the trunk support that he needs. It is also impossible for me to lift him in to a standard trolley. He’s just too heavy and tall now.

This leaves me with very few options. I could do my weekly shopping online, leave Daniel at home while I go shopping, or settle for buying what I can carry as I push his wheelchair.

I am sure that this is a familiar story to many parents of disabled children up and down the country. All of this changed for me when Sainsbury’s rolled out the GoTo Shop trolley to 650 of its larger stores.

The GoTo Shop is an adapted trolley for disabled children that provides extra postural and head support and a secure five-point harness. The GoTo Shop Trolley keeps Daniel safe and secure on our weekly shop.

The GoTo Shop Trolley has been a revelation for us, it makes life so much easier and Daniel actually really enjoys our shopping trips.

I think every family with this a disabled child should have the opportunity to use a GoTo Shop Trolley, this is the reason why I became a GoTo Shop Trolley Champion.

I am very lucky I have two Sainsbury’s stores near to me, but I like having choice. I love collecting my Tesco Clubcard Points, you can’t beat the Asda Mother and Baby Events, Marks and Spencer for little treats and Lidl fruit and veg every time. So you see, I’d like every supermarket in the UK and Ireland to have a GoTo Shop Trolley.

If you’re looking for a supermarket with GoTo Shop Trolleys, you can use the Firefly Finder App.

How to get involved

If like me you’re a parent of a disabled child, who would love to have the option of shopping where and when you want to, then we need to work together to tell every supermarket about the difference a GoTo Shop Trolley can make to our lives.

All you have to do is print out and add your name to this leaflet (PDF) and hand it in to your local supermarket managers.

Let’s raise awareness of the challenges we face in our daily lives as parents of disabled children. By showing how simple solutions can make a huge difference to families like ours we can encourage all our supermarkets to provide GoTo Shop Trolleys.

If you’re not a parent or carer of a disabled child, don’t worry! You can still get involved. Support the #GoToShop Trolley in #EverySupermarket by using our ‘Friends of’ leaflet (PDF).

On 2 August more than 15,000 amateur riders will take to the streets of London and Surrey for the third Prudential RideLondon-Surrey 100 – a 100 mile route on closed roads.

700 of those will be taking part for Scope as part of our official charity of the year team, and one of those is Carl. He knows the route having taken part in 2014 and will be hoping the sun shines, unlike last year!

“Box Hill was okay. But Leigh Hill was shut, we had to go down a diversion because of the weather and that was horrendous. So I’m hoping it’s not like that!” A keen cyclist, he’s often out with his friends testing themselves on the local hills. But there’s nothing quite like event day. “I think if you ride for a charity, the support you get on the day is fantastic. I rode with a couple of friends who weren’t riding for charity and they were completely in awe of us getting cheered on.”

Carl’s reason for taking part is his nephew. Connor was born prematurely and has cerebral palsy. Connor’s mum, Lauren, explained how they initially found out about his diagnosis through their physiotherapist. “One day I got asked to fill in some forms – I asked her for help because it asked what was wrong with him and I didn’t quite know what to say. She just said “well it’s cerebral palsy” but nobody had actually told us that. We were quite shocked. We just thought it was because he was premature, that he would catch up.”

Connor has received fantastic support from the local community. His first play group had a sensory room and it was here that he first walked – a great milestone when the family had been warned he probably wouldn’t walk or talk. “He walked properly. He was nearly three when he started, the same week as his cousin who was one.”

The family first came across Scope when they were looking for help choosing Connor’s secondary school – the local authority recognised that Connor was bright and wanted to place him in a mainstream school. But Lauren and her husband, Kevin, felt that Connor progressed more with one to one support at a specialist school. Connor went on to prove them wrong, attending the local secondary school and gaining good results in his GCSEs. From speaking to Scope and another charity called Network 81, they were able to encourage the school to make the alterations Connor needed for his education, including having his lessons on the ground floor instead of up two flights of stairs. But now, the real work begins – deciding what Connor should do once he leaves college. Connor is keen to get involved in a local community project, the Harwich Mayflower project, where he can socialise and discuss doing an apprenticeship.

When Carl saw that Scope were the official charity for this year’s Prudential RideLondon-Surrey 100, he felt it made sense to do the full 100 mile route with us. “Technically I didn’t complete it last year. It was 87 miles; it wasn’t 100 (due to the weather) so I felt a bit of a cheat.” He’ll be continuing his training and fundraising over the next few months, including a cricket night called Essex Legends, hosted at a local venue.

There’s still time to be a part of Scope’s Prudential RideLondon-Surrey 100 team. Get your place today and be treated to a hero’s reception, a massage in our chill out zone and TLC for your bike!

My eight-year-old daughter Scarlett has a genetic condition which means she can’t produce hormones the body needs to deal with stress, illness or injury. This means a sickness bug is life-threatening for her. She also has autism and sensory issues, which means she doesn’t always realise when she’s unwell, or let us know about it.

Scarlett is going into hospital again for surgery in two weeks’ time, and it’s led me to reflect on some of the things we’ve learned about hospital stays…

Every child has unique challenges

Scarlett’s sensory issues mean she sometimes has extreme reactions to things that might seem harmless. For example, she has always hated having anaesthetic gel (‘magic cream’, in children’s hospital-speak) put on her arm before she has a blood test or an IV tube put in.

When she was a baby I thought it was because she was anticipating the pain, but now I know it’s because the feel of it makes her sick. She actually vomits looking at some creams just at the thought of it on her skin.

Scarlett with her little sister, Heidi

Explaining this at hospital can be hard – she has been told many times “Don’t worry, it doesn’t hurt”, but to Scarlett, it really does!

It’s hard work for us, too

I am up almost 24 hours a day when Scarlett is in hospital. During the night I’m often up every hour to comfort her, or help get her to cooperate. It’s difficult to even leave the ward for a cup of tea.

A lot of care is expected to come from us rather than the hospital staff. The nurses do an amazing job, but they are often very stretched, and I can’t imagine what would happen if every parent handed over all their care duties to them.

It is also really expensive! My husband Andrew, Scarlett’s stepdad, often has to take time off work, and there are things like parking and food to pay for. Parents and carers lose their DLA if the person they care for is in hospital for more than a week, and I think this is shocking.

Explaining things can be difficult

It can be hard to explain to Scarlett what’s happening, and particularly why she has to endure so much that her younger sister Heidi doesn’t.

I’m always on the look-out for children’s books about going to hospital that don’t involve ‘getting better’ at the end. I have seen lots about having tonsils out, or a broken leg, but Scarlett’s condition will never go away, which can be hard to explain.

I find the best approach is to be fairly honest and say that the medications, procedures, operations and masses of appointments are there so to give her the best chance of staying well.

…But it gets easier

Taking Scarlett to hospital, and seeing her looking awful, has become less of a big deal over the years, but it is always a reminder of how fragile she is.

Scarlett with Dolly, one of our cats

When she was born, I remember being scared about taking her home because there was so much to remember. I was so anxious that I even bought a breathing monitor after a scary incident when I couldn’t wake Scarlett up.

Even now, I find myself looking at the doctors’ faces to see if they seem worried, and starting to panic – what if this is the time things don’t turn out okay?

But generally it has been far easier than I thought it would be in those early days. You adapt as a family, and Scarlett is very happy, lively and brave in dealing with the things life has thrown at her.

One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?”

Well, Livvy has no spoken language – she is ‘preverbal’. But, as we have learnt, there’s more to communication than the words we say.

I remember in the early days being so desperate to hear her voice. She babbled on cue at six months, but after an ear infection at eight months, she became eerily silent.

At first, we suspected her lack of communication was down to glue ear and that she couldn’t hear us, but after two grommet operations the words still didn’t come.

Livvy wasn’t playing social communication games such as peekaboo. She didn’t wave or clap. We spent hours with an inspirational speech therapist – she virtually stood on her head to get Livvy to engage, but it was very difficult.

Livvy with her brother Harry

Livvy then went through a stage of saying the word ‘more’ in a low, drawn-out way. You could sense the effort it took to push the word out. She would over-generalise this word, using it for everything.

And then, one day, she stopped, and we haven’t heard any words since.

Body language

But so much of our communication is non-verbal. Livvy’s body language is key to us understanding her mood, and she uses it to express choices or even an opinion.

This can be very subtle – a sideways glance, or a brief movement of her arm. She lets us know that she would like to get out of her wheelchair by moving her legs and arms and pushing on the sides.

Livvy can express pleasure by laughing, or annoyance with a low, irritated growl. She lets us know she is upset or doesn’t want to do something by raising the intensity of her vocalisation, or using a deeper tone of voice.

She most definitely recognises voices, and will turn to familiar people. I remember a few years ago rushing up to school as Livvy was not well after a very severe seizure.

Staff had struggled to calm her down and Livvy was pacing round the room, very agitated. I walked in and she immediately calmed down. It was a really memorable moment for me.

We felt the power of this was that she realised she was sending a message to somebody else – she was having a two-way exchange, the very core of a conversation. We’re now looking at eye gaze technology as a way for Livvy to make choices.

Livvy knows she is heard

We chat away to Livvy constantly. We have no sense of how much she understands, so it is important to tell her as much as possible out of respect.

Livvy with her dad Neil and brother Harry

We use intonation to give her a sense of what we are saying. We get close to her, we sit with her, I put my face very close to hers and tell her I love her. She cannot say it back but, very subtly, she will often smile.